Rare Disease News

Why Rare Disease Day Is Important to Me, by Chris Madden

Published February 25, 2020 by NORD

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Does anyone ever think that they may have a rare disease? Well, I for one definitely didn’t. Here I was, having my annual check-up with my very astute dermatologist, who …

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Head of the Herd: Bonnie Royster, CdLS Foundation

Published February 14, 2020 by NORD

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At the head of the herd is… Bonnie Royster, Executive Director, Cornelia de Lange Syndrome (CdLS) Foundation Bonnie most frequently checks her… Facebook Bonnie advocates for those living with… Cornelia …

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Gina and Gia’s Story in Honor of Rare Disease Day

Published February 4, 2020 by NORD

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My daughter Gia was diagnosed at birth with the rare disease sickle cell. Gia has had 5 bouts with pneumonia, many stays in ICU, and nine blood transfusions. Sickle cell …

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Wyatt’s Story in Honor of Rare Disease Day

Published February 4, 2020 by NORD

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This story is about our son, Wyatt, who was diagnosed with Coats plus syndrome at the age of ten. The story starts with my pregnancy. At 26 weeks, during a …

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Zuhriah’s Story in Honor of Rare Disease Day

Published February 4, 2020 by NORD

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This is my story of my own journey as a pyknodysostosis (PKND) patient. It began way back as any other PKNDs, but I started to experience the impact when I …

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Tucker’s Story in Honor of Rare Disease Day

Published February 4, 2020 by NORD

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This story is about my husband, Tucker. In 2004, we began to notice that he wasn’t able to play guitar like he used to, as well as that he was …

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Head of the Herd: Mike Morris, TANGO2 Research Foundation

Published January 31, 2020 by NORD

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At the head of the herd is… Mike Morris, Co-Founder & President, TANGO2 Research Foundation Get in touch with Mike on… Facebook and Twitter Mike advocates for those living with… …

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Head of the Herd: Leah Schust Myers, FamilieSCN2A Foundation

Published January 17, 2020 by NORD

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At the head of the herd is… Leah Schust Myers, Founder, Executive Director and Research Committee Chair, FamilieSCN2A Foundation Leah advocates for those living with… SCN2A Disorders Leah is located …

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NORD’s Work with FDA Gives Patients a Chance to Be Heard in Drug Development

Published December 3, 2019 by NORD

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By Debbie Drell, Director of Membership My sister was diagnosed with a rare disease, pulmonary hypertension, in September of 1998. At some point during her diagnosis, she was told she …

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Rare Caregivers Corner: Debra’s Story

Published November 22, 2019 by NORD

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One of the first caregivers to participate in the Rare Caregiver Respite Program, Debra shared with NORD how she used her award. “I was able to meet and have dinner …

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